I’d like to begin by thanking the school for being kind enough to give the kids a whole week off. A week of unstructured insanity. Three days without school and without Thanksgiving, so that kids who are totally focused on Thanksgiving get to spend those three days talking about it over and over and over again.
Then I’d like to look at all my Tuesday failings…
First: I left Simon unsupervised for a good five minutes at the library. Now, when I say unsupervised, I don’t mean alone. No. He was lying on the floor, reading the book he wanted to get in the children’s section, and I was sitting in the rocking chair about five feet away. I had books of my own I was going to check out, and I was distracted. I didn’t watch him every second of those five minutes. I just looked up to make sure he was still there, still happy, and not getting in the way of any of the other kids in the area.
And that’s my mistake.
I should have been watching both him and the other kids. Because while my eyes were turned away, one of those obnoxious little snot-nosed thieves stole Simon’s Blue’s Clues notebook!
Admittedly, he didn’t notice either. He was too engrossed in his book, a board book with bright colors that has a number of different animals in it. He’s borrowed it from the library at least a dozen times now.
So after a search of the area, with my loud “Do you see your notebook anywhere, Simon? Where did your Blue’s Clues notebook go?” (foolishly hoping a parent would notice their child had run off with it), we gave up, checked out our books and immediately came home so that I could grab a new notebook from its hiding place in the closet where we have a secret stash for moments like that.
Second: I let Simon talk too loudly in the dollar store. Well, maybe it wasn’t really too loud. But it was pretty loud. We got a lot of stares. But it *was* the dollar store. We’re not talking about high quality items or a generally upscale shopping experience. And it wasn’t that bad for most of the store, although he definitely shocked a few people when he kept telling them that the front door was big enough (Winnie the Pooh getting stuck at Rabbit’s house).
It wasn’t until we were in line that he started getting really loud and really echolaliac – yes, that’s a word because I said it was.
In line, with the cashier looking on, he told me repeatedly that we needed to go hide in the shower. I wouldn’t say she stared, but she did look like she might be interested in where the rest of that conversation was going. I went with the TV-talk, telling him that we didn’t need to go play hide and go seek and didn’t need to hide in the shower (Max and Ruby), but I’m not sure if she believed that was where it was going.
So if you happen to be the cashier from the store who was giving me funny looks while I paid for my items, please know – really, I swear, it’s from TV.
Third: I listened to seriously inappropriate music in front of Simon. I try to avoid doing that. I know that he likes to repeat words. And I don’t want to write those words in this blog, either. So I’ll just leave it at this: yes, I like my Lords of Acids station on Pandora. And, no, Simon hasn’t repeated anything from it.
I watched a lot of the Odd Couple when I was growing up. What that says about the parenting in my house, I won’t say. But I will say that whenever people make an assumption, I immediately think of Felix.
I got to think of that about a week ago when we took Simon out to a gem and mineral show. They had all sorts of cool stuff: fossils, meteorites, stones, gems, finished jewelry, and some people from various organizations showing off how to do cool things with all those bits and pieces.
One of the people doing demonstrations was a woman who was showing off how to polish up stones. She was talking about how to make facets, and she began going into the math of it: how many turns on the dial did you need and some other stuff I should remember but don’t.
She asked a math problem. It was basic multiplication, trying to figure out how to select the right number on the dial.
Patrick answered, and she semi-chastised him, telling him that she was asking Simon because it was a math problem appropriate for a 5th grader.
We blew it off, and we wandered into the showroom to look at all the pretty things to buy.
But it stuck with me, and it soured the day a bit.
First off, Simon isn’t in the fifth grade. He’s in the seventh grade, although he was held back and technically should be in the eighth grade. That’s neither here nor there, though. The point is, he’s older than the supposed “correct” age for the question.
Second, why would a random stranger assume she knows what level my son is at math? Or what level any child is at math? For all she knows, he has dysgraphia and struggles quite seriously with math. Maybe he has severe anxiety, and even asking him a math question would give him a panic attack.
Now, I’m not suggesting that people should all stop interacting at the risk of insulting each other. But I am suggesting that perhaps sometimes the parents know best, and if they jump in and answer a question instead of letting their child do it, perhaps they actually are doing it for a reason. Perhaps assuming that the child is capable of doing something just because you perceive the child to be the right age or the right height or the right whatever…well, maybe you shouldn’t assume. Because we know what happens what you assume, thanks to Felix.
Because it’s one of those days, I decided that I should go ahead and force myself out of bed and to school.
Because it’s one of those days, I left school early to get coffee and sushi.
Because it’s one of those days, I had forgotten to tell Simon’s teacher that I’d be picking him up early, and so I texted her and warned her.
Because it’s one of those days, Simon (who didn’t know he had a doctor’s appointment) had been telling his teacher that Mom was picking him up to take him to the rodeo.
Because it’s one of those days, I picked up Simon to take him to the doctor for his yearly check-up and his physical for Special Olympics, and he wanted his teacher to see Mom’s black car.
Because it’s one of those days, at the nurse part of the visit, I found out he is only two inches shorter and fifteen pounds lighter than me.
Because it’s one of those days, I didn’t realize that I was jinxing myself when I said, “Wow, he’s never done that before” when he let the nurse take his temperature orally.
Because it’s one of those days, it wasn’t until we went into the room to wait for the doctor that I realized the crotch of his pants had split and his blue underwear was showing through.
Because it’s one of those days, I didn’t have to feel like a bad mother for not noticing his pants had split because it was time for Simon to get changed into a gown.
Because it’s one of the days, the wait for the doctor had been going on for seemingly forever when Simon announced, “I have to go to the bathroom.”
Because it’s one of those days, a second after Simon made the announcement, he began peeing…on the floor…through his underpants and the gown.
Because it’s one of those days, there was a lot of pee. A lot of it. Like the whole floor was covered in it.
Because it’s one of those days, even though I told him to stop peeing, he kept peeing. And peeing. And peeing. And peeing.
Because it’s one of those days, I quickly pulled off his soaked socks, threw some paper towels on the floor, and dragged him to the bathroom to finish peeing (assuming there was any left in him).
Because it’s one of those days, the doctor walked in as I was trying to toss paper towels all over the huge puddle of pee, and I had to warn her not to come into the room very far because in about two steps, she would have slipped and fallen, and that might have been a bad way to start the visit.
Because it’s one of those days, I had to repeatedly explain to the doctor that no, this wasn’t normal behavior, he doesn’t pee on floors everywhere we go, and, honestly, he is pretty well potty trained.
Because it’s one of those days, I had Simon show off by saying dog in four languages (well, five if you include English) to the doctor since I kind of felt I had to prove that he doesn’t just go around peeing on the floors.
Because it’s one of those days, after the doctor left the room to fill out his Special Olympics paperwork and he needed to put his clothes back on, it was full-on meltdown time because he did not, I repeat, did NOT want to go home without underwear.
Because it’s one of those days, it took me a minute to realize that he had to wear his pants WITH THE HOLE IN THE CROTCH without any underwear.
Because it’s one of those days, the whole of pediatrics got to listen to Simon scream, at the top of his lung capacity, that he wanted fresh underwear.
Because it’s one of those days, I considered taking him to Target and just buying some new underwear for him, but then I realized that would mean walking through Target with him in ripped pants and his balls hanging out (literally) while he screamed that he wanted fresh underwear.
Because it’s one of those days, I decided against taking him to Target because we would probably wind up being arrested for public indecency, and I convinced him that we could go straight home and then he would have fresh underwear.
Because it’s one of those days, since we’ve gotten home, I’ve had a hot bubble bath and some Ben & Jerry’s ice cream.
Because it’s one of those days, don’t you judge me.
Because I have news for you. And it’s bad.
Last week, there was another tragedy in the special needs world.
He had left for school that morning, riding the bus.
He never made it to school.
His mother never heard that, though, and when he didn’t get home at his usual time, she called, only to be told he had been absent.
By the time she got through to the bus barn and had people looking, it was too late.
They found her son on the bus, dead.
At this point, there is no cause of death, and while the driver had been questioned, there are still no answers as to what happened.
This matters so much.
Simon is only partially verbal. I never know how to describe his ability. He can speak, but his speech is limited. He can often tell you when he wants or needs something, but there is really no true conversation happening most of the time, and I don’t know that he’s always saying what he thinks and feels, as opposed to just sharing lines from TV shows or movies.
Would Simon speak up if someone left him on a school bus?
But would he know what to do if someone left him on the bus while he was asleep? Would he get off the bus when he woke up? Would he go look for help?
I don’t know.
I don’t know if I could teach him to do it, either.
Because of that communication gap, I can’t tell you what he would do. I can’t tell you how he thinks or what he thinks. I know that he thinks – he makes all sorts of connections, and he learns quite quickly – but I can’t understand his methods of thinking and making connections.
And that’s scary when news like this comes up, quickly flashes across the screen, and then is immediately forgotten about.
Where is the outrage? Where are the updates? Why aren’t other parents getting up in arms?
Well, probably because they’re tired.
Parents of special needs kids have worries like this all the time. They have to be on their guard, they have to be ready to jump up and fight the good fight, they have to worry. And that can really wear you down after a while. It’s hard to fight for other kids when you have your own kids to worry about.
Times like this, though, require that we get together, that we share the news, that we reach out to each other. We need to know it happens, we need to learn from it when it happens, and we need to see what we can do to stop it from happening ever again.
This means I need you, wonder-people who bother reading my blog. You need to talk to your kids, your friends, your neighbors, anyone you happen to encounter during your school journey. Make friends with your child’s bus drivers, teachers, admins. Do everything you can to spread the word about the tragedy and to use it as a lesson, to never let it happen again.
I don’t want to, and don’t mean to, take away from the tragedy that happened in Lake Jackson on the 5th. A five year old girl was hit and killed by a truck. It was a freak accident. The girl was walking behind her father. She stopped and got down to look in a storm drain. She was too low to be seen by the driver.
I cannot image the pain that goes with having your child die. Especially in such a sudden way. Especially in a way that can lead to you blaming yourself.
Think about it: you turn your back for half a minute. You miss seeing that your child has gotten down on the ground. You don’t see that your child is in danger. It takes almost no time at all.
You will potentially feel that guilt for the rest of your life, I would imagine. I could only think that it’s nearly impossible to erase the feeling. Even though it isn’t your fault, even though it was just a momentary lapse – one that every parent has every day, multiple times, probably – it is the one lapse that will never go away. Never be forgotten.
This is a fear of so many parents and caregivers of those who love someone with autism.
It’s a real fear, a daily fear, a constant fear. A terrifying aspect of autism.
Children, and adults, can decide to run for no reason or for some unknown reason.
Simon is afraid of birds. Hearing birds, seeing birds, sensing birds…that can set him off. We have a handicapped tag to make sure that, on days that when the birds are converging, we can park close by and don’t have to worry about him making a break for it across the parking lot.
But not everyone can do that.
And not everyone can hold onto the person that wants to run. Or keep an eye on them 24/7. There are lapses. There are moments. And they are the scariest parts of the day.
Yesterday, Simon hit a limit. It wasn’t something that would bother most people.
Yesterday, Simon had to wait to go out to dinner. He’s bad at waiting. Very, very bad at waiting.
Yesterday, Simon melted down. He melted down hard.
He hit a point of no return, and he couldn’t stop himself. None of the usual things worked; he would not be distracted, he would not calm down.
Instead, he lashed out. At Patrick.
He attacked him as hard as he could attack.
He scratched. He pinched. He dug in his nails.
Patrick tried to restrain him, but each time he released Simon’s hands, Simon went for him.
Simon seemed to relax a little, said he wanted a big hug.
Went in for a hug, changed his mind half-way and began pinching Patrick’s stomach and sides.
Patrick tried to get out of the way, multiple times.
It didn’t work.
Finally, Patrick was able to sit and lean back far enough that Simon couldn’t reach him.
I got in the way, Patrick got out of the room, and since Simon has never scratched or pinched me, I hoped it would work out okay.
I turned out all the lights, got him to calm a bit, sat down and wrote out sentences about what was going on and what was happening.
After we’d finished a full page of sentences, he had calmed down to just crying.
Patrick had gouges up and down his arms. Slices in his skin, bleeding. The worst ones were on his hands where there were flaps of skin.
When Patrick came back into the living room, Simon was calm enough to apologize.
Simon was calm enough to go to the bathroom, to put on his flip-flops, to go to the car, to go to the restaurant.
Simon was calm enough to eat. To drink his orange juice. To come back home. To go to bed.
And everything was normal again. Like it never happened.
Except, of course, it did. And it might happen again.